MS Community

Advocacy

Many people assume that advocacy is a job better left to the astute lawyers and passionate lobbyists fighting for political change in Washington, D.C. This could not be further from the truth! Regardless of professional experience, you could be the best person for the job. The only requirements are persistence and the desire to make a difference.

People living with MS and those who love them have the inherent ability to be passionate and persuasive advocates. This is because their words come from the heart and from firsthand experience. Consequently, they are not easily daunted. In fact, every “no,” every closed door, just adds fuel to the fire. Being “on fire” for a cause is the key to effective advocacy.

Advocacy Is Empowering

Let’s face it. All too often, we sit around and complain about how the system has failed, how the government is making poor choices, how research dollars are going into the wrong pockets, or how accessibility is lacking in our community. Becoming an advocate means having the courage to take action and do something about the many injustices we see in our world. Taking action, whether we do it alone, with others in our community, or with our support group, is empowering. Those of us who have the power to fight must do so for those who are no longer able to fight for themselves. Maybe we won’t see the fruits of our labors – but the next generation will.

Choosing a Cause

The first step in becoming a successful advocate is finding a cause that is important to you. The cause you choose must be something you feel passionately about, something that causes you or someone you love pain, frustration, stress, inconvenience, isolation, embarrassment, or worry.

Accessibility and ADA Compliance

Peggy, a woman who never envisioned herself as an advocate, is a good example. A young mother with MS, Peggy is a wheelchair user with two daughters in elementary school. Unable to work full-time, she longed to volunteer in her children’s classrooms but was unable to do so. Why? The school was not accessible. This was extremely upsetting, not only to Peggy, but also to her daughters, and her husband.

Rather than giving up, Peggy began attending school board meetings, writing letters to congressional representatives in her community, and making phone calls regarding the lack of accessibility in the public school system. Peggy had found her cause without even looking for it and she could not have been better suited for the job.

Peggy continues to campaign for accessibility and advocate for enforcement of and compliance with the Americans With Disabilities Act. She hasn’t seen much progress yet, but she keeps going because she knows that someday soon another parent who requires a wheelchair for mobility will come along and she doesn’t want them and their children to experience the same frustration as her family did. Gradually, Peggy is opening doors for other individuals with physical disabilities and preventing discrimination against them. She must remind herself that these changes do not happen overnight. But with persistence, they will happen.

Improved Health and Prescription Drug Coverage

Michael’s circumstances led him toward a different cause. His wife was skipping doses of a much-needed medication for her MS. Sometimes, she would procrastinate or avoid treatment altogether due to the high cost of prescription drugs and health insurance. She did not want her husband and children to go without the things they needed in order for her to adhere to treatment.

Because he loved his wife and saw the challenges she faced, Michael began to advocate for better health insurance coverage and affordable medications. He wrote letters to the Department of Health and Human Services, the Medical Care Advisory Committee, the State Medical Assistance Office, and other agencies. He spoke at a local town meeting and it wasn’t long before others in the community who shared his plight, joined him in his efforts. Michael’s wife helps by making phone calls from home and discussing these issues at her monthly support group meetings. The couple is determined to continue their advocacy work and have already received a few encouraging letters and innovative ideas from agencies they have contacted. There was also a small article in their local paper, in which Michael was quoted, about the high cost of prescription drugs and the difficulties it was causing for them and other families like them.

Community-Based Alternatives to Institutional Care

Julie’s husband is only 45-years-old. Nevertheless, he is significantly disabled by MS and unable to accomplish many activities of daily living without assistance. When Julie began to investigate the options for in-home assistance and other alternatives to nursing homes and other institutional living, she was shocked at the limited resources available. She was also surprised to learn that Medicaid long-term care dollars don’t always cover community-based programs. Julie believed that she and her husband should be able to choose how and where he received services. This quickly became a hot button issue for Julie, and she began to champion for community-based alternatives to institutional care. It is a long and difficult process. But Julie says she is less depressed because she is taking action and even though desired results are not immediately forthcoming, action is far better than inaction.

Advocacy Requires Vision

In our society, where instant gratification reigns, advocacy is unique in that it requires vision, an eye toward the future. Advocacy does not pay off immediately. It may not even make a difference in your lifetime. But it will certainly lay the groundwork for the next generation. Think about the changes that have occurred in our country since 1990. Now, think about where we would be without those individuals who were willing to step up to the plate and make the first effort toward change.

As the great social activist Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”

The A-B-Cs of Advocacy

Identify the cause specifically.

Learn all you can about the topic and any rules or laws pertaining to it. Information can be obtained from the resources below, at your local library or law library, through books, newspapers, magazines, the Internet, town meetings, support group meetings, school board meetings, political events, etc.

Don’t be afraid to ask questions! You must understand the cause and all things closely related to it in order to be an effective advocate. Take notes, if needed, so that you will remember the things you learn.

Find out who or what organization makes decisions regarding the cause or issue. This could be the county school system, elected officials, congressional leaders, government officials, your condominium association, the Department of Housing, the local police department, the department of motor vehicles, etc.

Contact the person or organization via phone, email or postal mail.

Be as polite and concise as possible and be sure to include all of your contact information so that you can be reached easily.

If the person suggests you contact another person or organization, do so.

Follow up and be persistent. Anger and frustration can be useful tools in advocacy – but only if you use them to your advantage. Losing your temper or being discourteous will not be beneficial.

Don’t burn any bridges. If you develop a cordial relationship with a person who proves helpful, keep in touch. Be sure to thank them in a timely manner and add them to your list of resources.

Being a successful advocate takes practice. The more experience you gain, the more effective you will be. Mistakes, while embarrassing, can also be our best teachers.

Experience takes time so be patient. Even if you learn one new fact each day about the cause you for which you wish to advocate, you will be moving in the right direction.